Rhumatologist, why does it seem so many are getting it wrong.

[scoobydoo1]

the question is obviously in regards to Lupus. It seems so many rheumatologist either don't have the knowledge and experience or some are just down right rude and feel they know best or at least more than the person who actually lives with the condition. please share experiences.

[roobarb]

A combination of both, I'd say scooby. Medical knowledge & research is scant with regards to all auto-immune conditions, but some rhuemies seem to feel the need to belittle us & dismiss us because we do not fall into the realm of their understanding.

You would think this very fact would automatically earn us the right to some compassion & effort from medical professionals. Who after all, are meant to be there for OUR benefit NOT their own ego trip. But, for whatever reason, it doesn't seem to work like this.

But rant over, & I look forward to hearing other experiences & opinions on your very interesting point of discussion. X

[Chapter]

The first Rheumatologist I was referred to was wonderful. A very pleasant lady that saw me at my finest, impressive rash on face, neck and chest, feeling down, frozen shoulders, and ANA 320. She did lots of testing and a couple of weeks later started me on Pred and Plaquenil, with a diagnosis of Lupus Like Symptoms. Then we had to move to a big city where I expected there would be no issues. The first one I saw responded negatively to me when I said I was being treated for Lupus Like Symptoms and said she would do her on diagnosing. The appointment lasted about 10 minutes. When I went back a month later for follow up she said it was very unlikely I had a lupus, my rash had cleared and ANA was 160 which she said was false positive, so she wouldn't need to see me again as I did not have arthritis. I was not feeling well that day and I put up a bit of a fuss so she agreed to redo some of tests. I never heard from her again and had to request test results 3 months later. ANA >1260. She was the worst but started my education in "the doctor is not always right".

[scoobydoo1]

as I have said before I would be really ecstatic if they said Mark you don't have lupus, But you have x, y, or z . its the fact if they don't know why not tell you that at least you would have more respect and not be so peeved off and also have the opportunity to argue/ negotiate a referral to someone who does know what is wrong with you and can give you piece of mind and hopefully the correct treatment.

[jayfer]

my GP said from day 1 I had lupus and didn't give up until I got the diagnosis- 3 yr later!! I was initially told yes it's lupus ,no it's not, its fibromyalgia- which my GP translated as they don't know but it is an auto-immune disease. It took 3 consultants before they agreed I had lupus. By this time I had lost my job, and am still fighting for my pension through ill health retirement. Unfortunately the consultant I see now is not an expert in the field, but at least I'm on the meds

[flo_IarFachYrHaf]

I'm feeling lucky - but it shouldn't be down to luck. 10 years ago the problems I had were narrowed down to lupus or psoriatic arthritis & tendonitis, psoriasis finally won the day, it took a long time. I consider her a very good rheumatologist [I know others who would like to be able to see her] who was very clear that it was, in effect, a best guess.

6 years after my last appointment I have been again - she has concluded Lupus & Sjorgren's syndrome. It makes sense of some other health problems that have been nagging for a couple of years.

Rheumatology is not an easy and precise area of medicine and I would be very wary of any consultant who suggested otherwise. As far as I can tell it is often a combination of lists of symptoms and blood tests.

It's hard to be ill AND have to fight for a diagnosis.

There is a vacancy for a full time rhuematologist to work with the one I've seen, but it's been empty for 18 months, no one wants to work on the edge of the universe....west Wales.

[gabs in reply to flo_IarFachYrHaf]

Hi flofflach. I was diagnosed some 13 years ago and am under a rheumy in the University Hospital in Cardiff. I see her once in every two or three visits and she is excellent. ( I have appointments every six to twelve months depending on my condition and blood tests at the time.) However she is not a specialist in Lupus as far as I know and although a teaching hospital there is no Lupus Nurse which I find amazing. Fortunately for me I am fairly stable although 'wonky' days are becoming more frequent certainly as I grow older. Am now 68. I am so glad I found this forum as at last there are others who know what it is all about. Many thanks for the comments of all. Gabs.

[flo_IarFachYrHaf in reply to gabs]

as far as I know no Lupus nurse. an excellent one just titled rhuematology nurse. whom I saw a couple of times some years ago, she was very helpful to discuss pain management with paracetamol/codeine/tramadol [my gp also]. But it's not a teaching hospital - so feel lucky we have what we do. A couple of the nurses working within rhuematology in general have rheumatoid arthriris, that in itself is supportive and you are not talked down to or made to feel stupid. My rheumatologist is very crisp and clipped but also very observant and clear & informative. Not so sure about a couple of the doctors under her - but when I told her about things said & written, without naming names, she said that's not right.

but it shouldn't be down to luck and patients shouldn;t be treated like they don;t understand or are making a mountain out of a molehill.

[EOLHPC]

This has been very helpful to me. Ok, so I spent a lifetime being confused & bewildered & let down by consultants of many medical specialities being patronising and dismissive...telling me: you ONLY have x, y z and it's not so bad, just go away & do this....to whichever bit of my bod. And, of course, some stufff became more manageable, but so much continued to indicate i was generallyredisposed to bing poorly no matter what i did. It got to the point where I feared & distrusted ALL drs of any kind....but even alternative therapists, who could only help me so much......and I came to distrust even their sympathetic, attentive manner too.....cause, basically, They said pretty much the same thing as all those establishment drs.

So I KNOW the attitudes described so well in these posts here are pervasiveWIDESPREAD. BUT, then, several years ago, just as the progression of my systemic autoimmune condition (ok, I'm old it's SLE, and that I've had it since birth) was so evident throughout my bod, I hit up against a really bright, capable, experienced gp, and a rheumatology dept in a leading brit teaching hospital headed by a brill lupus specialist (both these drs are female) and hey presto I get diagnosis (sle, mctd sicca syndrome, hypermobility etc.....all based on medical history & examination mainly) and treatment, .......and over 2 yrs my symptoms respond to both plaquenil & more recently low dose oral prednisolone.....and then on thursday last our brill rheumatology dept specialist lupus nurse told me: grrrrreat: your response to plaquenil & pred confirms you do have SLE! So, even when lupus-experienced, enlightened & highly sophisticated members of the healthcare industry say I've always had/got systemic lupus, they remain hot on the trail for clues confirming their diagnosis. So i think: These clues are the encouragement EVEN these enlightened drs need to continue diagnosing & treating some of us whose lupus is mainly mild but with a pattern of more acute flares.

I love crime thrillers....fiction & nonfiction....and don't we all know that not all detective depts are as hot as each other. My feeling is that for now, I'm with a hot pair of detective drs: my gp & my rheumy. But after so many decades dealing with the other type of gp & rheumy, I can't help feeling I gotta be ready for my good luck to change. And scoobydoos ? + these replies help/remind me to feel I'm not just paranoid. This is the world we live in. We gotta stick together, build our knowledge of all aspects of our health issues & do the best we can to hang in there if/when our drs let us down....and hare with those who may need to care for us & be our patient advocates...If/when they do get let down by our drs, together (on this forum & with our carers...) we can find the strength to somehow get hold of the help we need. It's just a vvvvvvvvv scary life, cause if we're let down by drs when we're really really poorly.....or too old & infirm......to cope effectively things are extra tough....and we don't have carers.....uh oh.... I've got this in the back of my mind all the time. I try not to worry a lot bout my future, but I am a realist & need to look these possibilities straight on in order to cope at all. So thanks, guys, for this ? And your replies.....you've hoped me feel I'm not lone & not imagining this stuff

Gosh I feel kinda embarrassed going on like this.....but, hey, am I the only one of us who has gone through this & ended up thinking this way? I don't think so. We gotta stick together!

[twist1]

Absolutely :-). I agree with every word of this

[saranne]

Totally agree! and so happy to have found you all - on this site I am normal!!

All my doctors contradict each other although all but two over the years have been helpful. they def don't have the time or the knowledge. But as a teacher if a child joins my class with a condition I don't know about, I go home and read up on it, its my job too, so can't doctors?

Some don't see themselves as partners with us in maintaining our health, they see themselves as owners of the knowledge with all the power that gives them and we feel left out of our own care. Is there no protocol for dealing with patients who present with certain symptoms, we may be better of with a computer analysing symptoms!!

I spent 4 years telling one rheumy that My red eyes worried me she said well thats the sjogrens and I went for yearly eye checks but only last year I saw her registra she took it seriously i went to an expert he said i had the wrong eye drops! Problem is much better.

She also said I must take omprasole to protect gastro tract, why not told before?

And yesterday the chemist handed me the vit D and calcium in tablet form! I hated the chewable one it made me feel sick often didn't take them and had low vit D. No one said can you take them is there a problem, I could of had these tablets for last 5years!

I will be so much more questioning now, I am not exaggerating symptoms and feel backed up by all I read here.

Doesn't mean they will have any answers - but if we have all the info we can work together to find ways through this,

Only meant to say 'I agree' !!!

hope you all have a good day x

[scoobydoo1]

I am glad the post has helped. I can not understand how illnesses such as Lupus M.E etc are so prevalent in society, yet they are so poorly understood and cost everyone physically, emotionally and financially. Everyone knows about asthma or cancer and the tests are pretty clear cut for diagnosis and treatment options. so Why is auto immune type illnesses so poorly diagnosed and often treated. even when you go and give the doctor the diagnosis you still get no its not your bloods don't show that, well I know more about lupus than you then because the tests are only indicators and you have to utilise the agreed indicators for a diagnosis. if someone came into my a/e and said there wrists broke after they fell over, put there hand out and felt pain in their wrist and it looks bent, I would listen and using experience say they where probably wright then get them x-rayed and continue treatment, unlike some doctors who when faced with lupus just say no its not because they are not educated enough or are scared to admit they don't know but will refer on to someone who does. We are all human, what ever your illness you deserve the best care available by competent empathetic and well educated professionals. thanks for the responses Mark

[EOLHPC in reply to scoobydoo1]

yes...totally agree. i've had this chat recently with several 'mover & shaker' types of people who are close observers of which medical conditions get the attention & funding that can make the diff between, say, what it's like to have lupus and what it's like to have diabtetes/rtheumatoid arthritis/cancer/aids etc. i put to them the sort of stuff you're posting above, scooby, and they flippin tell me: it's all about publicity and concerted campaigning and the public's fanciful tastes & whims. which ever disease can grab public attention wins...kinda like those tv talent show we have now....and if the winning involves loads more publicity and loads a money....hey hey, then the funding moves into that winning disease, more centres of learning can justify teaching and research, results start happening, which makes for more publicity, fund raising snowballs etc etc.

i guess this makes sense and isn't totally me being easily convinced by these people who think they know the answer to the sort of questions we're considering here. if they are right, it's even more important that any of us, who can and are well enough to be active, DO ALL we can to communicate with our families, friends and doctors, and support lupus uk in the great work they are trying to do for us...join our support groups, get involved in fund raising and events, put a sticker on your car: whatever we can manage....we may not see results in our lifetimes (i'm 60 this october, haha, i know i keep saying this in my posts: i'm so excited i made it this far even this fit and can celebrate my big birthday on meds that are helping me more than anything else in 60 years).....

my other half and hero has had crohns disease (another autoimmune condition) since he was very young. it only got diagnosed when he was at university. back then, in the late '60s/early '70s hardly anyone had even heard of crohns (well, the condition hadn't even been named until recently). he & i have seen the diagnosis & treatment & public awareness of this condition gradually become greater. now, most people you run into will have at least heard of crohns. i hope the same for lupus....which haha is meant to be a condition identified & studied way back by the ancient greeks & romans....

i guess your point, scooby, that THE one thing that does seem to be common knowledge with drs is that lupus is a particularly diverse & complex condition... this seems to come in handy to drs etc who kinda like an easier life, and pass the buck when we turn up......a very human tendency: go for the easy life......well, i feel this wonderful forum & lupus uk gives us an edge with those types of drs: i gotta believe this...and i do see evidence it's true...but: for us & our carers, just coping day to day and especially communicating with drs about all the stuff we manage all the time plus the dreadful flares....is a heavy load. so stick together people, and we will be more able to make a diff for the better, even if mainly on a personal scale here on forum

oh dear, sorry, you got me back up on my soap box, scooby!

[Hidden]

I totally agree with you there. Feels like you are just complaining for the hell if it!! This i hence also a local GP also. I have a lovely Lupus nurse who i can talk to and on here blogging!

[gillyb62]

I went to my GP (some years ago) with a severe pain in my wrist, so much so, that I couldn't even pick up a pen. He thought it was carpel tunnel, so did some blood tests. I got a phone call from him asking me to come into the surgery as they confirmed I had Lupus. He said he wasn't expecting that result and admitted he didn't know much about it and had printed some info of the internet!! I thought this is good, he doesn't know anything and neither do I. He then referred me to the Rheumatology at the hospital and he didn't believe I had lupus, so he did some more blood tests and they came back positive, he put me on plaquenil and that was it!! I have been on this drug ever since and have only had the odd 'blip' where my wrist has played up. However, the last few days I have started to get a bit of a raised 'rash' on my face and its quite sore and I'm don't know if this is a reaction to something or if it is my Lupus. I can't see the point in going to my GP as I feel they will just fob me off. I have taken an antihistamine to see if that will help. If anyone has any solutions to this I would appreciate your feedback.

[scoobydoo1]

just a thought, I wonder how many Rhumatology doctors and nurses come onto sites like this to update their knowledge, I can honestly say as a health care professional Google does get used simply because you cant know everything, if you think you do you are delusional. quote of the day "whats the difference between a doctor and god... god doesn't think he's a doctor" quote not intended to cause any offence, mark.

[chrisj]

I guess I was lucky enough to find quality care in my hospital visits...its my gp I had the gripe with. They treated me for rheumatoid arthritis for a long time, with diclofenac, which months later had me collapsing from internal bleeding. A camera down the throat showed an ulcer..the doctor using the camera said "thats a biggun"...not very encouraging but they had me in theatre and repaired the damage..I will never take another inflammatory as long as I live...

Later on I went to my gp to get a sick note and the locum that day asked if I'd had the "rheumatoid business" investigated...no says I....so within 2 weeks of seeing him I was back at the hospital for loads of blood tests, went back again a short time later to find out what it was all about. The doctor came in and I asked was it cancer, she shook her head and said no its Lupus....WHAT??? I'd never heard of it. She explained a little and gave me a leaflet that I read when I got home, so many things fell into place that day. I've been going for checks ie blood tests since 2005, they're down to one per year with a visit mid year to see the specialist Lupus nurse and they've been lovely. Not going to get better but at least its all under control....Some consultants have better bed side manners than others, but on the whole the ones I've seen have been good, I cant complain...

[Cheryse]

I know where your coming from. I had one young Dr say "Lupus, isn't that another word for Yuppie Flue". Why is there not more awareness of Lupus within the medical profession in this day and age.

[anbuma]

I was diagnosed with fibro in 2005 and have had lupus symptoms fro at least 2 years btu still dismiss them saying its fibromyalgia,i know its not cos don't get skin rashes with fibro.my rheumy dismissed scalp and skin rashes/sores and nasal sores and swelling bruising around eyes.and kept on about diet not listening when I told him I didn't hardly eat much more than breakfast.

[Ania73]

Hi there all, Im new to this site, but this question has really struck me, as I to have had a horrible belittling experience at Rheumatolgy. I was refered after having two periods of ill health, with many of the symptoms, flue like aches and pains, stiffness in my ankles, knees and elbows. Unexplainable musle and nerve pains, and fatigue like I have never experienced. My GP who I cant fault at all, finally got my blood tested and it came back positive for an auto immune disorder, so I was referred to Rheumatology with suspected Lupus. The consultant basically sat taking notes, without even looking at me, then said he was convinced by my medical notes I had lupus, but now he isnt sure all because I dont have swelling in my joints! even after me explaining im in agony most of the time when I walk and especially first thing in the morning. I left feeling like a total fraud and hyprocondiact!! Thankfully my secind visit 6 months later wasnt as bad (different consultant) but no information given to me, just that they will keep me on the Hydrocoloquine and see me in April!!